Does anyone personally know Michelle Knox? Because we’d like to be friends with her. We have much to talk about. Listening to this story about her on NPR, we had a classic NPR “driveway moment.” We laughed out loud along with a little bit of car-crying.

We wanted to know more. It turns out that Michelle works in finance in Sydney, Australia. She is a traveler and blogger who lost her father in 2017. Her personal experience in grief and dying motivated her to research how others talk about and prepare for death. She found that it’d be a lot easier to live if we talked about death now while we are healthy.

Listening to her TED talk is a master class in how to talk about death in a straight-forward way while even being funny. She reminded us of what we’ve discussed before about the benefits of planning ahead. There are so many overwhelming decisions to be made when someone dies, as she points out: “coffins, headstones, headstone wording, headstone font size... all while sleep deprived.” It gives our loved ones comfort to know in advance what we would have wanted, and takes some of the burden off them in making the many arrangements. Don’t we all want to give our loved ones that small comfort?

She also uses the term “good death” because her father died as he wished: at home, surrounded by family, peacefully. We’ve written about the concept of a “good death” before. We could relate when Michelle said that it was a privilege and gave her peace to help her father follow his wishes to achieve a good death. We’ve also taken notice of people out there working to change our avoidance culture and help others achieve a good death. There was recently an interesting opinion piece in the New York Times by one of these amazing humans about people’s desire for nature at the end of their lives. Even with all the wonderful people working in palliative care, it still takes some planning on our part: reflect on what you consider a good death, and tell your loved ones, before it’s too late.

We are proud that our sister achieved a good death. We hope for the same for ourselves. Towards that goal, we are writing more of our wishes down. Michelle’s story was a great reminder that we should think through all the details, including wishes for burial and memorial services. She brings up many important considerations like: “Do you want to be near the ocean, or in the ocean?” We believe, as Michelle does, that planning ahead doesn’t need to be scary or sad. In fact, we might make it “fun” by opening a bottle of wine!

There are many moments where we are hit with the overwhelming absence of our sister, Colleen. This summer was full of new experiences and big events but, still, the recurring pangs of her absence. It just keeps happening, you guys! In the past several months, we have cried in front of a large audience (more than once) and spoken our truth about our sister dying to strangers and friends alike.

We cried during our presentation about sibling caregivers, which we knew was a strong possibility but still took us by surprise. We thought that we could be like robots and simply share our reflections on caregiving, but when we talked about our sister and our experience as sibling caregivers, our feelings got the best of us and we did get choked up. Although we shed a few tears, we were able to keep speaking and we made it through our planned remarks.

More recently, we once again found ourselves in front of a large audience talking about our sister, Colleen, while giving a toast at our younger sister’s wedding. We wanted to acknowledge our oldest sister who was absent from this monumental family occasion. Although we had practiced the speech a few times, it was even more difficult to get the words out, perhaps because we were speaking in front of friends and family who shared our sense of loss.

Although we can’t help but worry how we appeared during these events - like, was it really bad ugly crying or was it respectable? - we also have bigger questions about how to talk about and share our experience with others - like, will we be known as the girls that always cry about their sister and are sad? Yet, for the most part (we think?) when we opened up, our comments were well received. At the conference, an audience member told us to remember that it is our story and no one can change that or take it away. That remark has stuck with us. We realized that we can share our story even though it is sad because well, those are the facts. We can’t make up a different story, the story is what it is. And as our aunt told us after our wedding toast, we had to address the elephant in the room - Colleen - because she was on everyone’s minds.

Since these experiences, we have been learning to push aside the voice inside that questions whether we should be talking about it. Am I making others uncomfortable? Am I being overly dramatic if I do talk about it? Am I being weird when I don't talk about it?

These instances of showing emotion and being honest about what happened felt like such positive steps that lately we have been brave enough to talk about Colleen and our loss in everyday life! Regardless of the reaction we get, we have realized that it doesn’t help us in our grief to avoid the topic or try to cover it up, and why should we have to? It hasn’t gone off without a hitch, though... We often wonder, did I just drop a big bummer in the conversation? Was that ok?

On the day of our sister’s wedding, a wedding vendor who we had just met was asking about our family and we were explaining each of our “numbers” or birth order. She paused and said, “oh, well, who is the oldest? Was she unable to be here?” It felt like a punch to the gut. We also felt badly for her, who innocently wandered into this conversation. But without hesitation, we replied that our oldest sister died a few years ago. She was very kind about it and it didn’t end up feeling awkward. It was a freeing feeling to just be honest and not worry how it would sound or make others feel.

In the past few months, we have told coworkers and new friends about losing our sister for the first time. Sometimes the topic comes up when you’re getting to know someone, and questions about our family were more frequent with a family wedding this year. New friends or colleagues would ask: “So, there are FOUR girls in your family?” And we’d be forced to explain: “Well, actually, five, but our oldest sister died…” It was interesting to see that when we told the sad truth, some were very sensitive around the subject and others just passed over it, as if we said that our hamster had died. It is shocking and maddening when the latter happens - like, you have no further questions on the subject? Weird. And a few times, a new acquaintance or coworker was dealing with a loss and we had to navigate whether to bring up our experience or not - like, is it helpful to explain that we might know something about what they are going through (although we know that no two experiences in grief are the same), or does it just bring the attention back to ourselves?

We aren’t sure where these self-conscious feelings come from and have been trying to figure it out, likely a combination of others’ uncomfortable feelings surrounding death and grief and our own nerves. Do people make us feel like we shouldn’t tell the truth? Or are we nervous about showing emotion in front of other people? Are we supposed to just keep it to ourselves, like that was “the past”? Do we feel weird because others are so awkward? (probably yes) Are we still scarred by the grief police?

Of course there are situations where it may be best to keep to yourself, but we are trying to be more forthcoming. Maybe if we can show strength in speaking about our experience, it will make others more comfortable. We also don’t want to worry constantly about others and how THEY feel. We will probably still struggle at times to share our experience, and some may judge our grief, but it doesn’t change what happened. It is our story.

Caregiving has been on our minds lately. A recent article on caregiving and new efforts to provide respite, training, and other help to caregivers gives us hope. It provides examples of caregiving training methods, such as in-home coaches, and explains the need to support family caregivers. We related to this quote from a provider and caregiver: “‘I'm a physician, and when I take care of my mom, I have an endless loop in my head,’ of the to-do list.”

We took this opportunity to talk about young adult and sibling caregivers, in particular. We explained that we think siblings make amazing caregivers because siblings know each other the best, have a long history, and may feel most comfortable being their true self with each other. While young sibling caregivers face the same challenges as all caregivers - stress, difficulties with sleeping and focus, juggling demands - they also have unique challenges as young adult caregivers - isolation from peers, lack of workplace flexibility and financial stability, and sometimes child rearing. And in addition to all of that stress, they lack status or recognition as important members of the caregiving team, since they are somewhat unusual as caregivers and aren’t thought as as “typical” caregivers. Most people picture the parent or the spouse acting as the caregiver, and assume adult siblings have moved on once they have moved out of their nuclear family home, and maybe started their own families. There are a few things that we found rare and that contributed to our feelings of isolation and unimportance- lack of receiving direct information about what was happening with Colleen and having to rely on her or our parents to convey it, ineligibility for Family and Medical Leave Act, or FMLA, coverage, and lack of many stories and reports about sibling caregivers.

During the symposium, we met many people who validated our feelings and who were grateful to us for sharing our story. One nurse told us to remember that this is our story, our perspective, and no one can change that or take it from us- those words still stick with us. We spoke to people who told us they related to our story because when one of their siblings was ill, they also rushed to be by their side. They also felt marginalized in caregiving and in grief. We also heard from providers who agreed that siblings aren’t thought of as typical caregivers. In addition, we heard from other types of caregivers who echoed some of our feelings. For example, they spoke of the “blessing” of caregiving and that they wanted more sensitivity in discussions of options at the end of life. They wanted more training. We met a medical professional who didn’t want the hospice team to know her background and wanted to be trained in caregiving like any other member of the public. We loved this point that she made and agree that no one should make assumptions about family caregivers’ abilities and training needs.

We felt uplifted by stories of others’ caregiving experiences, especially their dedication to their loved ones, and validated by common sources of frustration. We never thought that we would have this “new hobby” of reading and researching about death and dying, or that we would feel so at home at a symposium on end-of-life care, but we are glad to find community in our new reality.

The past few weeks - indeed every January and early February - are some of the most difficult for our family. Just as we begin to recover from the holidays, we are hit with Colleen’s birthday and a few weeks later, the anniversary of her death. Her “death-iversary” is a significant but somber day that we want to recognize, but one that seems weird to “celebrate.” We don’t always know how to react, what to share, what to do. This annual marker coincides with cold weather and post-new year's pledges. We find ourselves with pent-up energy, organizing drawers and closets in a bit of a manic state. We literally can’t help it. Shane opens drawers and when they look messy, immediately needs to fix them, can’t look away. Jessica ordered a label maker and puts labels on everything to feel like things are in order. We get upset when members of our households don’t understand the “new system.” Our home organization compulsion takes over briefly, but it helps us to cope with the recurring sadness this time of year.

We don’t have many friends that we can commiserate with about the death of a sibling at a young age. We feel as though we are in uncharted territory. Are we supposed to be like, “hey can I leave work early to go to the nearest Irish pub because my sister died on this day?” Or “I’m having trouble focusing on anything other than the anniversary of my sister’s death, so I’m just gonna stay in bed, cool?” Or “I’m sorry your remodel is delayed, but I don’t actually care today because my sister died three years ago.” Or “I’d love to join happy hour but I have a conference call with my sisters because this is our sister’s death-iversary... it’s not weird, you’re weird!” Yet we did begrudgingly get out of bed, we did go to work, we just sort of carried on, but everything felt off, every memory sharper. Maybe we should have just been honest and said those things in our heads, even if it would mean making others uncomfortable.

Death-iversaries are a strange, emotional day. This year, some time has gone by, but the pain is still here, leaving us unsure how to acknowledge the day. We are impressed with family and friends that continue to remember the day that Colleen died and reach out to us. How do they remember? We have a hard enough time with birthdays. These amazing super humans not only remembered a momentous day in our lives and thought to reach out to us, they actually did it with calls, texts, emails, flowers. We are in awe of them and hope that they share their secrets soon (maybe they could take over our birthday calendars, because we’re sure that they’re better at that, too).

We’re far from perfect, but if we were to copy their model-like behavior, we would reach out to friends on their difficult anniversary dates. Or maybe just whenever they are on our minds and we are thinking of them - even if it’s not a death-iversary - that, too, is really nice. We’ve heard people say that celebrating a deceased loved one’s birthday is a more positive date to acknowledge, and some friends did reach out on Colleen’s birthday, a date they may have already been tracking, as opposed to the date of her death. From our perspective, either one is a day that our minds are especially on Colleen, so either date is a good time to hear from friends.

We tried to come up with some things to say next time we remember to be a good friend. We probably can’t avoid our sarcastic humor, so we might say things like:

Today must be hard for you, but we could get cheese and drinks to make it feel better?

I’m always available if you want to talk about today or even if you need to swear and yell.

I’m sorry this day is crappy for you, but do you want bacon?

I’m here for you if you want to drink a bottle of wine.

We probably would NOT say that heaven gained an angel or that Colleen is looking down on us because that always makes us think that we want her with us instead of up there or wonder what she’s been saying behind our backs, like what's she saying? what did you hear?

Or if we decide to take a more tactful route, we’d say something simple, like “thinking of you” or “sending hugs.”

Or we might say something simple with a little humor. On Colleen’s birthday, one friend said, “Happy birthday to one hell of a big sister.” It summed up our sister perfectly and made us smile.

At the end of life, things can fall apart quickly, and neither medical specialist nor hospice worker can guarantee a painless exit. But we were told a palliative expert would be at my father’s bedside if he needed it. We were not told this was conditional on staffing levels.

— Karen Brown

The author, Karen Brown, shares her family’s in-home hospice experience and their best efforts to care for her father who was dying of pancreatic cancer. It is a difficult read as she describes her poor father’s uncontrolled pain, the lack of support from hospice due to staffing shortages and, as a result, their stress as they fumbled through trying to alleviate his pain.

We have discussed the challenges of in-home hospice before, as well as the significant commitment placed on family members, in response to the same Politico article she references. We have also discussed the barriers to hospice enrollment that we experienced, and explained that we wanted the support from hospice and believe that we would have benefited from earlier enrollment, similar to many families who report dissatisfaction when they are referred to hospice too late. Although we are proud that our sister was able to die at home, at peace, and surrounded by family as she wished, we felt uneasy at times without any hospice visit during the last 72 hours of her life.

We relate to the feeling that hospice did not live up to all of its promises. In our past post, we noted that, according to the National Hospice and Palliative Care Organization, “at the center of hospice and palliative care is the belief that each of us has the right to die pain-free and with dignity, and that our families will receive the necessary support to allow us to do so.” Looking back at this statement, it sets expectations that were not met in either of our experiences. Interestingly, the author reached out to this same trade organization in her piece, and their response was that “good hospice experiences ‘far outweigh’ the negative ones.” Wait, so, the author’s father’s pain crisis during his last hours would not outweigh someone’s nice comments about their primary hospice nurse? Is it acceptable to assign relative weight to a negative hospice experience, or to get it right on average? When we were having our babies, we didn’t hope that our OBs would “mostly” get it right, that the positive birth stories would outweigh the negative ones. Why should it be different for us and our loved ones at the other end of life?

Due to the negative stories that we have heard and read, we wonder if the majority positive responses to surveys about hospice are representative. Perhaps those who were happy with their hospice experience and want to share their gratitude are more likely to respond, while those with negative experiences are too sad to make complaints or answer surveys, just as Karen Brown felt. In any case, we share her perspective that, overall, family caregivers should be better prepared for reality when taking on in-home hospice care. Hospice may not be there, holding your hand and walking you through the end. Therefore, family caregivers should be better trained to handle death independently, and we believe that would lead to better experiences with loved ones in their final moments.

Ultimately, the negative experiences should be unacceptable, no matter the average feedback. We should place value on each individual achieving a “good death.”

November is National Family Caregivers Month and we wanted to take time to recognize all family caregivers. Last year, we were celebrating them, too.

Caregiver Action Network announced the theme “Caregiving around the clock” and has some good tips and resources. While the stress of caregiving can often be overwhelming, we wanted to learn about how other caregivers ask for more help or delegate.

We asked former and current caregivers if they asked for help and how they looked for resources. Of those that we asked, most reported that they asked for some kind of help or searched for resources online to mixed success. As Working Daughter discussed, not all of us are good at asking for help.

The most common obstacles to asking for what we need are thinking:I don’t need help.I should do this.I don’t want to bother anyone.Asking for help makes me look weak/lazy/incapable/selfish….It won’t be done right.

— Working Daughter

Looking back on our personal experience, it was an acute and rapidly changing process in caring for our sister. Her symptoms changed and increased dramatically and our stress levels were extremely high. It was physically and emotionally taxing and we often felt to be in a fog and we weren’t sure how to ask for help. It sometimes felt like another thing “To do”- reach out to others for assistance with meals, the children, coordinating rides while we were traveling to help our sister. We wanted people to read our mind but we know now that is not possible!

Our younger sister, Caitlin (#4 in the birth order) helped care for our sister with end stage cancer. She was 27 when our sister died. She stated, “ I tended to look for resources myself rather than asking for help, partly because as a young caregiver for a young person, not many people I knew had been in a similar situation.” Caitlin was among the estimated 19 million young adult caregivers as of 2015, an under-served population. But if no one can relate to your experience, Caitlin has some great ideas about where to find resources, advice, and tips. “ I researched online, both through sources like the NIH for mainstream questions on how to manage a certain symptom, and through articles and blogs for things like easy, healthy, make-ahead recipes. One advantage to reading message boards and blog comments is finding tips from someone dealing with a similar illness that apply more specifically to your caregiving issue than a general article would. Also, YouTube videos were perfect for learning exercises, stretches, and massages to deal with aches and pains. Yelp and other review sites were essential for crowdsourcing local resources--massage therapist recommendations, or take-out dinner ideas when we were too overwhelmed to cook.”

Similarly, Feylyn Lewis, a doctoral researcher focusing on young caregivers, responded: “As a youth caregiver, I did ask and search for resources on young caregiving, hoping to find stories of young people who cared for their parents like me. To my dismay, I didn't find anything, nor were health professionals aware of resources either.” So, Feylyn took it upon herself to do searches online and ask her therapist at the time. She notes that there is an increasing presence of online support groups on social media for young caregivers and the isolation she felt has inspired her to help change this for young caregivers today.

Kristen Farrar is a caregiver for her child with Type One Diabetes. She said, “Having a child diagnosed with Type One Diabetes is similar to having your first child. You don't really know what you're doing at first and there is a lot of learning as you go.” She also explained that while the most overwhelming part was right after diagnosis, there are frequent times when she still feels overwhelmed. Kristen immediately reached out to a co-worker who also had a child with Type One Diabetes and became involved with the non-profit JDRF (Juvenile Diabetes Research Foundation).

Mary Lou who cares for her husband said that she tried searching online for meal ideas when she felt truly overwhelmed trying to figure out what to feed her husband between conflicting medical diets, little appetite, and doctor’s orders to use low sodium. She also asked the doctor for a referral to a nutritionist and is waiting to hear back. We can personally relate to the challenges of dietary restrictions and good nutrition while caregiving!

The Family Caregiver Alliance reminded us that there are many resources listed here on their website with statistics, reports, and tips about caregiving. They also have stories from caregivers about their personal experiences here.

A common theme that we heard in talking with other caregivers is to find others to commiserate with, to decompress, to confide in. Kristen said, “When I do, I vent to my husband or reach out to an amazing group of local women who have Type One children. We have a group text where we vent to each other. Each fall we do a charity walk for JDRF. We also try and get together for breakfast or dinner once a month. I'm on some Facebook pages that I read sometimes. It helps to read about others who are going through similar things as my family.” Caitlin said “I learned that it really helps to have others to rely on, and I was lucky to have our whole family involved in caregiving. For any caregivers working on their own, I think finding friends or community members to vent to and bounce questions/ideas off of is essential to staying sane and energized.”

Speaking of relating to others going through something similar….we just discovered this Podcast which features stories by family caregivers, The Happy Healthy Caregiver. We also recently learned about a program through the University of Denver, Center for Oncology Psychology Excellence (COPE), offering psychological and emotional support to cancer patients and their families. COPE is the first psychology program of its kind in the nation to provide comprehensive training and partnership with cancer center. They stated, “Caregiving takes an emotional and physical toll on the body. It is a lot of work! Everyone is always saying you need to talk care of yourself before you take care of the person you are caring for, and that is really hard to hear, but it is so true! Taking self-care time to go for a walk, or do something focused on the caregiver is important to stay healthy.” They offer several great resources in the Denver area and online, many of which can be found on their website here.

Caregiving is hard. It is also very rewarding. As Caitlin said:

 I was also surprised to learn how difficult but still rewarding the experience can be. It was extremely hard for our sister to need us to take care of her, and it was exhausting for everyone, but I am so glad we we could be there for her.

— Caitlin

There are many ways to learn and grow from caregiving experiences. Kristen says she would be more honest in order to decrease her stress, saying “I try to minimize or downplay with family and friends how hard it really can be to manage Type One. So if there is one thing I'd do differently it would be to be more open and honest about how stressed or frustrated I can feel at times.” Caitlin says “I would have taken more time off work--which is a luxurious choice most people don't have. It was hard to predict how our sister would do week to week, and while I missed the familiarity of my routine, I wish I hadn't put pressure on myself to keep up with work and take on added stress.” Mary Lou says “Patience! Slow down and do one thing at a time. Lower my standards and don't worry about it. More Patience!” She adds: “Sometimes the most important thing I could do for Jim or my Mom, was to just hold them, and love them.” Feylyn says, “I try to stay mindful in the moment and not live so ‘future-focused’! This helps my worry immensely.” Looking back, we agree that we would be more honest about our overwhelming feelings, worry less about the insignificant things, and do our best to stay present.

We enjoyed gathering all of the insight that these caregivers, professionals, and experts have shared and hope it helps you too.

We have talked about how the fall season triggers our grief before. We still consider it a wonderful season, but moments of sadness and anger slip in. We feel two-faced in our relationship with fall. It’s great and terrible. Nothing makes us happier than walking into Trader Joe's and finding that the pumpkin Danish Kringle has arrived! We love fall weather, fall colors, fall decorations. But we also get angry thinking about how our sister got so sick during this beautiful time.

And so now the old anger phase is flaring up again… knowing that our sister comes up in conversation less and less often, giving us fewer chances to talk about her and share memories… realizing that a new friend didn’t know us when our sister died when the awkward moment comes to talk about our family, not knowing how to answer a question about our siblings - do we say “I’m one of five girls”? Then do we explain? We worry no one wants to hear about such a “bummer” as someone once called it - our sister dying, a “bummer”.

The anger phase then leads to the “no one understands us” phase. If only they understood “The Compound” better they would get it. Should we show them all of the funny messages that we get from sisters on a daily basis so that they “get it”?

The anger phase comes again when watching fall TV and the return of old favorites that remind us of our sister and new shows that annoyed us - no, we haven’t gotten over it. And that leads us to revisit our swearing phase…..

We feel angry out of a sense of unfairness and a place of frustration. Like why did this have to happen? Why was our favorite season tainted by such heartache? And can’t we just talk to our sister already - it's been way too long, and only she has some of the answers. There are so many reminders of Colleen during the fall, too. College football, apple season, fall fashions, family birthdays and anniversaries. Some of the best parts of fall just aren’t the same without her.

Our grief is a cycle that comes and goes. There is no way of knowing when we will get through a phase or go back into one. In the meantime, maybe the pumpkin kringle will help.

We discovered this informative article by Joanne Kenen in Politico thanks to a tweet from Zen Hospice Project, an amazing hospice care provider in the San Francisco Bay Area. The article recognizes both the importance of home hospice and its challenges. The main point that the article addresses is the fact that dying, family structure, and illnesses have changed over the decades, making the traditional model of hospice out of sync. It is a worthwhile read.

The article explains that hospice pushes back against the over-medicalization of death and emphasizes comfort and family. But in today’s world of advanced medical treatment, as we’ve discussed before, it can be difficult to determine “the right time” to enter hospice.

When patients elect hospice, they must usually give up on curing or containing their disease—a difficult decision to make in a system that dangles the promise of a medical fix just within reach. In practice, people often turn to hospice for only a handful of days, at the very end, after using up a lot of expensive high-tech care that may have drawn out death more than it extended life.

— "Hospice in Crisis", Joanne Kenen

Adding to those issues, the care needed during home hospice can be a significant commitment for family members, complicated by the fact that families have changed, living further apart and less likely to be available for full-time caregiving. As we experienced and as the article says, the primary and time consuming care is given by the family. The article’s author writes:

No matter how good and caring the hospice team—nurses, aides, social workers and, as desired, chaplains—much of the work falls to the family. And even when the family is willing and well-equipped, as my own family was as we took care of my father with hospice in the final months of his life, it’s not so easy to die at home.

With an aging Baby Boomer population, this problem needs solutions now. Unfortunately, the solutions are complicated. The article discusses several ideas for changes in payment structures and policies but notes that, as for Washington, “a comprehensive national long-term care program is so challenging economically and politically that hardly anyone in the capital even bothers talking about it.” And while doctors and policy experts have some ideas, the article explains “they are still in the ‘floating ideas’ stage, not agenda items for Congress or the Medicare agency.” We feel optimistic to know that researchers like Joan Teno, whose research on hospice care we’ve reviewed before and who is quoted in the article, are working on these complicated and urgent issues. Unfortunately, clear solutions and ways to pay for those solutions are yet to be determined. While we wait, there are many families currently struggling with caregiving and suffering through less than optimal hospice experiences.

Perhaps what we are most excited about is the article’s discussion of “the relatively new specialty of palliative care.” Palliative care offers a similar philosophy as hospice but does not require patients to give up curative care, like chemotherapy. Some hospices even allow “concurrent care,” which allows patients to start hospice while keeping some regular or palliative care treatments. As we’ve said before, this is a much needed reform. We are also hopeful for reform based on the results of a study described in the article:

Medicare’s Innovation Center is running a multi-year test of that approach for four diseases, including advanced cancer. The idea is that patients who get the symptom management and emotional supports of hospice and palliative care, and who come to better understand their own illness, make different choices.

The idea there being that if patients understand their options and goals better, they can decide if the benefits of drastic treatments will outweigh the risks. This concept reminded us of Lucy Kalanithi’s inspiring Ted Talk. For more on making choices as a patient, by asking “what medical care will help you live the way you want to?”, watch Lucy’s talk here: https://www.ted.com/talks/lucy_kalanithi_what_makes_life_worth_living_in_the_face_of_death

We are hopeful that the ideas posed in this article, such as different payor systems, holistic approaches, technology and telemedicine, will provide better hospice outcomes, including for the caregivers and families involved. At least it seems that there is a movement, a cry for help to try to prevent the “tsunami” that Joan Teno warns is coming. She personally told us “stories move policy” and we wholeheartedly believe her.

We recently read several interesting articles and research about caregiving. For any of our young adult readers who are actively involved in a caregiving role right now, we are cheering you on and personally understand how tough of a job you have. You are among an estimated 19 million young adult caregivers as of 2015 and have been identified as an under-served population, as we’ve reported before. Sometimes our stressful period of caregiving seems long ago, but we can be taken right back to that moment by reading about others’ experiences. And we are fortunate to even have the chance now to read and reflect, considering all of the young adults out there who are caring every day for a loved one - no time for reading, at least not anything longer than a pamphlet, no breaks, lots of To Do lists, sleepless nights. Hopefully with good friends, great snacks, plenty of cheese, and funny entertainment to accompany you. Click here if you need ideas for a good laugh.

When reading this article, we almost didn't even flinch: “New research from Transamerica Institute finds caregivers risking their health and finances to care for loved ones” was the tag line. We've heard that before and we know it is true. But wait, this should be shocking, right? Why isn’t this in the headline news?

Perhaps our experience has made us numb to these reports or immune to shock from these statistics, because we have experienced many of the negative effects that are discussed - not being fully prepared for our duties, taking time away from work, putting our own health aside. We’ve read about similar numbers and problems before. But when we put real faces to these issues, and think of young adult siblings, in particular, going through these struggles, we want more solutions. At the very least we want to send them a care package with triple creme cheese or our favorite humidifiers via Amazon Prime, and stealthily drop a basket of beer and brownies on their door step.

Are we becoming blase to this problem? If we just keep talking about the issues, it will become better, right? Facts like only half of caregivers felt properly trained to administer certain medications or perform nursing duties keep happening. We must do this better.

The amazing Feylyn Lewis, PhD researcher on young adult caregivers and guest blogger, shared this research with us several months ago and it spoke to us. It makes the point that research doesn’t usually share or seek out the negative consequences. Yes, so true! We can’t always paint a rosy picture of caregiving. There are harsh realities, stress, and much hardship involved. This research reports the perceptions of children and young adults on their experiences of having a parent with dementia. The truth came out, in sometimes surprising and sad ways, but we give them tremendous credit for sharing their reality. Only through honesty can we understand better what it is like to be a caregiver, and it may be therapeutic for others if they share feelings in common with the research subjects. They discuss “taboo subjects” or those that aren’t considered socially acceptable, such as “I don’t like my ill parent”, the sense of “waiting for death” over an unknown amount of time, and the distressing behaviors of dementia. The researchers were criticized for their focus on the negative but, unfortunately, the experiences of the subjects were not positive. The researchers explained: “their stories of the impact of dementia on their lives have been negative. We consider not acknowledging these experiences would be unethical.”

We are very curious to hear about your experiences. What is the hardest toll for you, your family, or your career that caregiving has caused you to pay? Do the reports and statistics paint an accurate picture - too optimistic? Too bleak?

As we’ve posted about before, we have a special interest in books about dying, books about grieving, and other such uplifting topics! Actually, we truly admire those that can write about such heavy topics in an honest and even humorous way. Here is a short review of what we’ve been reading lately. Post in the comments section or email us if you’ve read any great books this summer!

Sheryl Sandberg shares her tragic story of losing her husband unexpectedly, leaving her a single parent to their two children. In addition to Sheryl’s experience, this book shares others’ stories of loss and suffering while also finding ways to impart wisdom and inspiration. It somehow digs out the uplifting aspects of grief, sharing how we may become better. We especially liked the discussion of “post traumatic growth” where you move forward in a positive way after loss.

“It is the irony of all ironies to experience tragedy and come out of it feeling more grateful. Since I lost Dave, I have at my fingertips this unbelievable reservoir of sadness….But along that sadness, I have a much deeper appreciation for what I used to take for granted: family, friends, and simply being alive.”

It’s no secret that we are big fans of Emily McDowell, her hilarious cards and other products.We've mentioned this book before, but continue to recommend it to anyone that wants to help a friend in grief or a difficult situation. It may also make a good gift as everyone could benefit from learning to do better in those "don't know what to say" situations.

The authors provide real life scenarios with supportive things to say and do. Beyond practical advice, it is easy to read, funny, and full of of pretty graphics and “empathy tips”. One of our favorites:

“If fix it platitudes are so unhelpful, why are they so common? ….We (our culture) believe in getting things done rather than just letting things be, and we believe that “healing” means getting over rather than learning to live with loss. Our discomfort with suffering, and our rush to make it stop, can result in simpleminded fixes that suggest the problem of grief is an easy one to get over. This superficial effort just makes the suffering person feel even more broken (and pathetic) for suffering at all, and more detached from the person trying to help. For all these reasons, it’s best to avoid look-on-the-bright-side phrases and platitudes. Instead, find out how your friend is feeling about what’s going on. It’s simple: just listen.”

The author tells her story of undergoing breast cancer treatment while losing her mother to cancer, and ultimately losing her own life to her cancer. Although devastatingly sad at times, it is also touching and hilarious, and covers the perspectives of patient, caregiver, and griever. Some of our favorite passages:

“I don’t belong in bed, but I don’t fit in out in the world either. I have a sense of myself as a broken camera – focusing on something out on the horizon (the future, cure, recurrence, death) and then, without warning, zooming in on a blade of grass (what is that weird taste in my mouth… did anyone remember to pack a snack for the kids). And then zooming out to the horizon again, and then back, and then again. I can’t figure out where I’m supposed to point this thing.”

“If there were an exam on the caregiver booklet that hospice gave us… I feel confident that Charlie and I would both ace it. It’s almost midnight. We are sitting at the kitchen counter of our parents’ house, obsessively going over the checklist that attempts to break it down by weeks, days, hours, moments. Preparing for the unpreparable… scanning for something that is not there.”

This book puts concepts that every working mom will recognize into vocabulary terms like “close encounters of the half-insane kind” when a mom gets mistaken for an extraterrestrial by normal humans, or “list paradox” when you make a to-do list to give you a sense of control but there are always more items than can be crossed off. Even though it isn’t about grief or dying, the author keeps it real and keeps us laughing. Caregivers may find it comforting to read about another “half-insane” person or coping skills like “ignore the tray” – meaning rather than focus too much on the load you are carrying, watch where you're headed and everything will be just fine. This book normalizes the chaos of being a working mom. We enjoyed reading that we weren’t alone in feeling overwhelmed and imperfect sometimes- something that we all, including caregivers, need.

Since we are obsessed with home organization, this book can only serve to take our obsession to a new level of crazy. It offers tips room by room in short blurbs and easy to manage projects. Plus the pictures of beautifully organized houses are so pretty!

Funeral planning, really? We know... We talk about the most uplifting topics, don’t we? But, as we've written about before, often it is hard to know what to say or do when your friend or family member is going through the difficult process of planning a funeral. What about when you're the one who needs to make all those stressful decisions?

Robyn Lewis summed it up perfectly- “It is often such a short space of time that you have to make many decisions, on everything from caskets and grave stones to hymns and flowers, especially when you don’t feel fully up to that level of responsibility.” She wrote an article for AK Lander to shed light on the stressful event of getting ready for a funeral. She asked for our opinions and added some of our thoughts, too. Reading her advice directed to the funeral plannees (can we coin that term?) may also give friends and family ideas for how they can provide support and help to those going through it. We can't expect them to do it all, even if they try to.

We hope for comfort to funeral-plannees and super-friend-powers to those that aim to support them. Share how you have helped a friend during this difficult time in the comments section below.

Our sister died 2 years and 4 months ago. Sometimes this time that has passed seems incredibly slow with little progress. We still find ourselves grieving while on a run - our mind wanders to Colleen, we suddenly just really need to talk to her, the grief feels raw, and we are AGAIN crying while exercising. We’ve been known to cry on treadmills, we just didn’t think that crying while working out would still go on and on. We thought that phase was a thing of the past, but it still happens on occassion.

Photo Credit: https://whatsyourgrief.com/64-quotes-about-grief/

Yet, it can also feel that a lifetime has passed since Colleen was sick. It is sometimes hard to remember the time before that in detail, perhaps because so much stress and sadness intervened. Guest blogger Kate wrote about how the second year is really hard when you let your guard down and reality sets in. Unfortunately, she is very correct.

Recently, we went on a family vacation and it was wonderful to be together, but we couldn’t escape thinking about how Colleen was supposed to be there. Our family dynamics are a bit different now. She would have had strong opinions about the planned activities, lots to say about the families in matching T-shirts and babies dressed as princesses. We wonder if she would have ridden on the roller coasters even though she used to hate them, just to be brave for the children in the family. She would have kept us laughing and positive in the heat and crowds, and known exactly what to do about the family photos. We will never get used to her absence, but we didn’t expect to go on vacation and feel her loss so palpably.

There are days and moments that continue to be a struggle, especially when we want Colleen involved in all of the events of our lives. Birthdays are particularly tricky, maybe because they mark the passage of time. Whether it’s her birthday, our birthdays, her daughter’s birthday, our childrens’ birthdays, we just wish Colleen was here for them and other events. It feels strange that our lives continue, we get older, and we watch our children growing up when Colleen can't do any of that. Time marches on without her.

Perhaps time is irrelevant when talking about grief. Time is moving both slow and fast. Colleen’s death doesn’t feel that long ago, but it feels like decades since we have been able to be with her. Grief sneaks up on us, stops us in our tracks, and takes us right back in time. We didn't predict that we'd still feel this raw at this point. Somehow we keep going, even if we just need to cry while running and hyperventilate for a little while, then move on. Colleen was the strong one, and it’s hard to keep up the strength when she isn’t here. But we are becoming tougher, some days.

Did you see this article in Real Simple? It caught our attention with the tag line: “Most people find death too depressing to talk about. But that denial has a huge price, and it’s loved ones left behind who will pay.” Obviously, we kept reading and wanted to share it with you.

We were somewhat prepared for our sister’s death, but there were still questions that came up, as the article suggested. Like, what should we do with her Facebook account? Are there any bills to pay? What are all the accounts that need to be notified and closed? What are her passwords to myriad things? Fortunately, our sister was incredibly organized and she had taken the time for a great deal of thoughtful planning. Yet somehow there were still questions, things none of us thought of in advance. Some unforeseen issues are inevitable, but knowing what to consider and communicate in advance about your wishes and your affairs can save you and your loved ones from much of the stress. Many people who have experienced the death of loved ones will say, as our guest blogger April Koontz did, that “Being prepared to die is the greatest gift you can ever give” and also that you will also reap benefits from doing so.

The article describes services offered by Good to Go, an advanced planning company that helps people get all of the tough questions out of the way. They have private or corporate consultations, parties, or an online option where you can order a “Departure File.” Are you thinking why didn’t we think of this? We are. We especially love how Amy Pickard, founder of Good to Go, makes the planning seem like such a positive step and even enjoyable.

Even though we seem to like to talk about death and dying often, we still have our own work to do. After reading this article, we are reminded that we want to make it easier for those that we leave behind. We will write more things down, review our advance directives, and continue considering and updating our final wishes. Since we love lists and organization, we should be facing this task with the same motivation and find similar satisfaction with the end result. We hope others can do the same.

Recently we have seen some of our favorite topics in prominent journalism and television series: caregiving daughters, end of life care, and death and dying. We took notice and have been thinking about them ever since. The articles have us contemplating how we can make dying better and how caregiving daughters can thrive as part of the American health care force. We have previously talked about why our employers should pay attention to us, strong and successful women who also make kick ass caregivers. But when our loved ones are dying, will medical professionals be able to help us attain a “good death”? These issues pull at our heart strings, because we want caregivers to be supported, especially when faced with orchestrating end of life care.

The recent NY Times article, "We're Bad At Death. Can We Talk?" by Dhruv Khullar suggests that we continue to struggle with the right time to enter into end of life care mode. We agree, as we’ve previously written, it can be full of worry to find the right time to enroll in hospice, not to mention figuring out how to talk about it. It is a bleak reality that there are patients dying who have frequent medical visits, procedures, hospital stays, instead of making plans to live the end of their life as they wish and at their home. Although it was challenging, and we felt unsupported at times, we are proud that our recent experience with the death of our sister would be considered a "good death". She was at home as she wanted, peaceful, and with immediate family surrounding her.

The article states that research shows “physicians die in hospitals at the same rate as everyone else”, but our sister was not going to be one of those statistics. She felt strongly about never being in a hospital again and we were not going to let her down. Just as the article suggests, there is still work to be done - some medical professionals don’t have confidence in how to talk about death, access to palliative and hospice care in certain areas of the country is a problem, overly-aggressive or unnecessary treatments for those dying still happen. And maybe the stress and uncertainty that comes with independently caring for someone dying at home isn’t for everyone. Khullar states that there are differing opinions of what a “good death” means. Indeed, and adhering to the patient’s and family’s wishes is key.

Oprah just shared a spectacular interview with B.J. Miller, a palliative care and hospice physician, where they discuss death and dying. They examine deep subjects such as preparing to die well and spiritual aspects of death, with tough questions from Oprah such as: “What has being around the dying taught you about living?” B.J. Miller’s calm and positive attitude toward death is worth your time. We liked much of what he said, but this particularly resonated with us: “Dying isn’t so pretty….when someone can sit with you and be with you in that state- is an amazing thing to offer someone. To be present. It can heal many wounds.”

So not all are bad at death. Our sister and B.J. Miller can teach us some great lessons - to be realistic, to not be afraid, and to exist in the now.

We are happy to introduce this week's guest blogger and friend, Kate Bales, who shares her story of sibling loss. Like our family, Kate enjoyed a special and close bond with her sisters. She was the oldest of three girls and lost her youngest sister, Beth. Sadly, Beth was only 20 years old. Kate shares a touching story of coming to terms with such a significant loss and finding comfort in signs.

It’s hard to believe my sister would have turned 35 this month. It’s also hard to believe that she has been gone for fourteen years. However, the hardest thing I have to believe is that my sister is not coming back.

I still remember small instances of my disbelief on the day I found out. I was in graduate school. At that time, my roommate was the youngest sibling of old family friends. She was a special friend to my sister, Beth, when they were little. My roommate’s mom had been battling cancer for a long time and I knew her end was near. So when I returned to the apartment from an errand and she greeted me at the door with tears, I didn’t understand why she told me to call my parents. I remember my heart sinking for her and thinking it was odd that she would want me to call my parents for them to tell me that her mother had passed away. I went back to my room and dialed my mom’s phone number. I could hear the hushed, urgency to my mom’s voice that she always uses when she has bad news. She told me they were in the car with my aunt and uncle who were driving them down to Milledgeville where my youngest sister, Beth, had been killed in a car accident.

They were headed to the hospital to identify her body and even though she had just said Beth was dead, the mention of a hospital gave me hope. I asked if they still might be able to fix her. I didn’t want to believe that she was really gone and not coming back. In the foggy aftermath I learned that Beth had been driving back to her college apartment after hanging out with friends when her car was t-boned by a driver who ran a red light.

For a while after her death, it was easy to pretend that she was still away at school. Even though I thought about her absence everyday, I didn’t have to feel it because I was used to being out on my own and away from my family. I think her instant death also made it easier to believe she was still around. I didn’t have the long days of agony and then hope and then agony that I imagine is felt by those who lose a loved one to sickness. My sister was here one day and gone the next.

It wasn’t until the second Christmas without Beth that her absence really hit me like a kick in the gut. Christmas was a time that we were supposed to be together. I had prepared myself for the first Christmas but when the second came around I had let some of my guard down. I remember sitting in church with my parents and my middle sister, Ashley (I am the oldest of three girls). I noticed that we didn’t take up as much room in the pew. The visual reminder that we were now a family of four made me cry.

It can be very tough to think about Beth. However, there are many times that I can think about my little sister and smile. Beth was a superstar! She was funny, dramatic, loud, and enormously loving. She was the only person I know that got a parking ticket while parked to pay for a parking ticket. She didn’t pause for a moment before going down to the local nursing home to take her sorority’s “adopted grandma” out on a date. She would throw the sweet lady’s walker in her car and whisk her off to get ice cream. She could talk to a stranger and wasn’t afraid to do what she loved. I admired and benefited from this quality in Beth. I often asked her for help in social situations. Once when I was feeling very shy about selling school, fundraising calendars, Beth took me out, knocked on doors and sold all my calendars!

I still ask for Beth’s help. When I feel sad, anxious or fearful, I will talk to her. She may not be able to physically answer me but I look for comfort from her in songs that come on the radio, glimpses of butterflies, etc. An example of the comfort from butterflies came at my grandfather’s funeral. My grandfather was being buried at the same cemetery that Beth had been buried at years before. After his funeral service, I walked over to Beth’s grave sight. On my walk, two white butterflies fluttered close by. I had once heard a saying that butterflies are angels in disguise. Even though it is just a sweet saying, seeing those two butterflies brought me comfort. It felt as if Beth was telling me that she and my grandfather were still with me. So even if I have to believe that Beth is not coming back, I choose to believe that she is still near.

Unfortunately, we have become all too familiar with the struggles of caregiving and grieving, and have been contacted several times for ideas about how to help a family member, friend, or colleague struggling with a variety of difficult situations - a new caregiving role, a terminal diagnosis, a death of a loved one. It feels like these tragedies are happening all too often, even to young adults. We don’t consider ourselves the experts, but we try our best to provide useful tips and ideas.

First, know that simple actions of support and concern are often enough. We have previously talked about comforting products and how to help a friend in grief as well as related topics in other specific posts noted below. Here, we came up with additional ideas - that anyone can do - tailored to certain situations. We reflected upon our own experience, but also received great tips from family, friends, and experts - all listed below!

For those in a new caregiving role:

Consider how you might ease your friend's burden in other areas of life besides their new caregiving role: Do they have a pet you can walk or check in on? Can you drive their kids to after-school activities? As our Mom suggested, “Offer to do a specific errand- like pick up groceries, pick up kids, make an airport run-sent by text. No calls!"

An easy way is to help with meals. Perhaps a group can organize meals on a schedule or invite others to sign up via mealtrain. Or it can be as simple as baking some cookies and dropping them on the porch.

But it may be that you are not local and want to do something from afar. Simple ideas are a funny card from our favorite Emily McDowell, or one of her bravery pins, a small care package of their favorite things like coffee, chocolate, lotion.

We heard from Feylyn Lewis, M.A., NCC; University of Birmingham, who is an expert in young adult caregiving and recalls the most important things that help her in caring for her mother:

Grace. Someone giving me grace to be imperfect and to simply 'not be myself'.

Realness. I appreciate when a friend is authentic, as that allows me to feel free to be authentic too. It's so freeing to live from a place of honesty.

For other grief related situations:

Dr. Gloria Horsley, a grief expert, bereaved parent and founder of Open to Hope along with her daughter Dr. Heidi Horsley, shares her wisdom and recommends her website www.opentohope.com. She states, "Lean on our hope until you find your own." Helpful things that were provided to Gloria after the death of her son were:

Sitting with us and reading a book while we ate our first meal

Getting a dog

Having my boss at the nursing school assign a friend to stay with me the first week back to work.

Do something in honor of the deceased. Run a race for them or donate to a cause that they supported.

Write down a funny memory of the deceased and send it to their family members.

April Koontz, a sibling griever, caregiver, and founder of Daughters Unite, remembers a kind gesture from a friend. "The day following my brother’s sudden death – I looked out my front door and saw my neighbor mowing my lawn. I broke down in tears. She knew how important it was for me to have my lawn looking good and took it upon herself to mow it without asking."

Drop off brownies and a six pack of beer. It doesn’t have to be a full course meal, just a way to show that you are thinking of the person. (Thanks, Mom)

Friend and guest blogger, Lindsay, opens up about what helped her after the loss of her sister: "With respect to people who were primarily my friends (i.e. not necessarily family friends or people who were also close to my parents or sister), asking how I was doing in particular and not just how things were going in general. I imagine this would be especially true in a caregiving situation, as it made me feel supported at a time when I sometimes felt like it was my job to support other people or to hold it together." She adds, "Picking up when I didn't want to talk about it and distracting me by talking about other things and treating me like a normal person."

For various difficult times that are probably pertinent to both cases involving the stress of caregiving or grief:

One thing April would recommend is, "Respite. Just figure out when you can give an hour or more and call and make arrangements to do it. Don’t ask ‘what can I do?' or say, ‘call me if you need anything’."

If they have a sense of humor, send funny cards on a regular basis. Send cartoons.

People don’t seem to make “mix tapes” anymore, but you could send them a playlist of soothing music or music that may help them cry and grieve. You could also send an iTunes gift card for them to download their own choice of entertainment.

Feylyn Lewis again shares sage advice for one simple thing that a friend can do: "Understand when asking how I'm doing, I may immediately respond 'Okay, just fine.' because I don't want to burden my friends with my heavy emotions. Don't be afraid to ask again, and/or help create a space where it's easier to share, i.e., going for a walk, sitting quietly, etc."

In this Caregiving and Grief News Roundup, we share several touching personal stories we came across in the news recently that resonated with us, as well as a few positive stories from around the country.

First, this beautiful story in the Washington Post emphasizes the importance of simply being there with a loved one at the end of their life. We found ourselves nodding and tearing up reading, as Jennifer Palmieri writes: “Of all the moments in my life I had with my big sister, the ones with the most value, the most intimacy, the most joy, were the ones I spent simply holding her hand in her hospice room. No distractions, no expectations or pressures, a time to simply be present, to simply be sisters.”

This real and emotional story describes a cancer patient being disappointed in how she was treated as a person in the hospital. Sue Robbins makes what seems like a reasonable request: “Please treat me as well as you are treating my tumour."

Of course, one may expect to become a caregiver later in life, perhaps for elderly parents, but when caregiving comes in your 30s and 40s, it is unexpected and stressful. This NY Times article describes experiences from different “off time” caregivers who face the difficulties of juggling careers, child-rearing, and missing out on fun activities.

In Ohio last week, the state legislature passed the Ohio Caregiving Act, which ensures hospital patients' designated family caregivers are offered instruction in providing needed care at home.

From Indianapolis comes a new app, Patch Health, designed to help multiple caregivers for a loved one coordinate care. Brilliant!

Earlier this month in Seattle, radio station KEXP teamed up with the Seattle Cancer Care Alliance Proton Therapy Center to present “Music Heals,” a day long program of stories and music with the power to lift our spirits and heal our souls in the face of cancer. We love this concept! We've featured music on our Resources page and stories from guests about the power of music to heal and a survivor’s playlist.

We tend to write letters if we are passionate about how terrible our travel experience was, or why our senators should listen to us, or reasons that hospice needs reform. In this case, we need to tell Hollywood how they continue to get it wrong when it comes to dying.

Dear Hollywood,

We wanted to raise an issue with you. We don’t mean to criticize, but you need to know that when it comes to dying on TV and in movies, you’ve got it all wrong. We know that this is a tricky subject and you’re trying to create touching stories, but in many cases, we are afraid that you’re misleading people. Plus, the inaccurate picture you’re painting has simply started to rub us the wrong way.

Prior to our experience of watching our sister die from cancer, we were just like many other blissfully unaware people watching things like “The Bucket List” - two old men break out of a cancer ward and go on adventures around the world. Ok, sure.

But more recently, we were watching a popular TV show - "This Is Us" - and couldn’t finish watching the episode. And it’s a great show, stressing the importance of family and siblings. We are fans. But we couldn’t keep watching. In typical Hollywood fashion, one contained in an alternate reality, the man who is dying takes one last road trip with his son, to hit up his old stomping grounds, making last visits to places that he loves.

We couldn’t watch it because it angered us. Dying people are often frail, tired, weak, and, frankly, feeling pretty crappy, so getting in a car to drive hours and hours is not what they want to do, nor do they have the energy for that. Beyond it being unrealistic, it perpetuates the message that those who are dying should do just that and, if they don’t, they have somehow submitted too easily to dying or not lived their life to the fullest.

We felt pressure to do something grand with our sister as she faced the end of her life. A few well-meaning people even suggested that we take a vacation together. (They must have watched "My Sister's Keeper" too often and remembered that ridiculous and impractical beach scene.) But it was not feasible. It also caused us to question how to make the end “meaningful.” Yet, when we look back, we have no regrets. There was meaning there. Despite your portrayal of dying as an adventure-seeking opportunity, a time to plan impromptu trips, we had countless worthwhile moments spent in our PJs on the couch, laughing over a comedy, hugging, crying, and enjoying quality time with our dear sister. Those moments mattered- being together- not time spent trying to coordinate a trip to jump out of a plane.

Why is it that the fantasy of movies features one last gesture, one last big hurrah, one final trip? This concept of a “bucket list” is even a social media craze - there’s a hashtag for it, #bucketlist. We get that anyone wants to feel like they have had adventures and accomplishments, lived a full life, but maybe we can leave the dying out of this? Uncouple the bucket list idea from the end of life stage. Let’s call it something else - maybe a “full life list.” #fulllifelist. Yes, movies and TV are entertainment and showing us the reality of dying is anything but entertaining, but misrepresenting it is not ideal either.

As this article in The Guardian teaches us, a bucket list risks chasing the future and not coping with the reality of the present, or facing death. Psychologist Linda Blair brilliantly explains: "But if you're constantly living in the future, ignoring what's going on right now because you're shooting for goals, which happen so quickly that they're over, and then you have to chase another one, you're not really living." Perhaps your focus in Hollywood should shift toward living life how one wants, pursuing those items on a wish list as an everyday goal, and cherishing and respecting one's relationships. That way we won’t all be panicking to have a final, meaningful moment and we won’t put more pressure on those who are dying or their loved ones to try to manufacture meaning at the end.

Our feelings were echoed recently by comedian Patton Oswalt who tragically lost his wife last year and who told NPR how pop culture gets it all wrong when it comes to grief: "Just look at super heroes, he says — their motivation is often rooted in loss that 'leads them to travel the world learning martial arts and doing CrossFit and getting really cut,' Oswalt says. 'And that's not been my experience.'"

Are you thinking that we should already know this about you, Hollywood? Is it obvious that you don't always accurately reflect reality? Fine, we don't always want you to. We want distraction and comedic relief, too. But other people don't seem to know the difference either, otherwise we wouldn't have gotten some of the questions about our plans for making a beach trip in our sister's final months. Our purpose in writing you is to encourage you to continue to entertain us, continue to create touching stories, but that you also consider the reality of end of life. The reality for most is that the insurmountable sickness and sadness involved does not allow much energy for adventures. And yet, there is meaning in the everyday moments with loved ones, and that is a lesson that has been lost.

‘Tis the season once again - time to celebrate our Irish heritage! We are reminded of our St. Patrick’s Day post last year, when we launched this website. We shared one of our favorite quotes:

Death leaves a heartache no one can heal;

Love leaves a memory no one can steal.

- Irish Blessing

We are proud to announce that we are celebrating our 1 year anniversary of this website and blog! Although it has been a time consuming and sometimes difficult road, it has been incredibly rewarding. We are impressed with the real writers of the world who do this regularly and our respect for them has only grown. Just when we had moments of thinking that we couldn’t keep this up, a great idea would strike us in the middle of the night and we felt inspired again. We thank you for the support and as always, we thank our role model and big sister, Colleen, for constantly motivating us to work harder and to make an impact on the world just as she did.

Below is a recap of the year in images and quotes.

"Our goal is vast - to help not just other young adult and sibling caregivers and grievers, but also to reach their family members, friends, and colleagues, as well as health care professionals, in order to increase awareness and understanding of their needs. We can all improve upon our ability and capacity to discuss death and dying, to prepare ourselves and others for it, and to support those that are going through it. Even though these are big goals and big topics, we think Colleen would agree that we should try to tackle them." - Our Motivation Behind Losing a Puzzle Piece

"After Colleen died our house was transformed by what seemed to be a million bouquets, orchids and ferns, a rose bush and a new tree in the backyard: a physical manifestation of Colleen's reach. The places where we dwell define our dealings with death, almost as much as our intangible memories and feelings."- Maggie Gets It: A Place Like Home

Check out some highlights of these guest posts through their beautiful images: (Click on the image to link back to the blog post.)

"[Colleen's sisters] were there no matter what. They knew her better than anyone. With them, she didn't have to put on a show. If she wasn't feeling good or didn't feel like talking, or even felt crabby, she could let her true feelings come out. This is what siblings provide in Caregiving." - A Mother's View of Sibling Caregivers

It has been quite a journey and we can't thank you enough for your support. What we have gained from this website and the many touching stories is difficult to put into words. Every day we are reminded of Colleen and the pain of having to go on with life without her does not go away, but this website has given us purpose and for that, we are thankful.

We are beyond excited to introduce our little sister, Kerry, as a guest blogger. As the youngest of five girls, Kerry has always shined and held her unique place in our big family; here, she yet again shows off her knowledge and insight as an architect. Our sister Colleen, in particular, would be proud to read Kerry's discussion of how the "built environment" can promote healing and Colleen would appreciate the unique form of care offered to cancer patients by Maggie's Centres in the UK.

Everyone knows Colleen was a champion of everyone around her, but she was especially protective and supportive of her sisters. When I showed more artistic than athletic promise as a young person, Colleen insisted that I take an art class outside of our basic grade school art program. I don’t remember how old I was or if she was in medical school or her residency at the time, but I do remember her driving me to the weekly class, rushing me from basketball practice at least a couple of times. Colleen barely played me when she coached my 7th grade basketball team, so her believing in my artistic abilities was HUGE. I knew she wouldn’t push me to do something just to be nice. Plus, taking an art class where I knew no one probably prepared me to go to a college where I knew no one, and major in architecture, of which I knew nothing.

So, it is with my background in architecture that I would like to relate to caring for Colleen at the end of her life. The built environment (a term Colleen loved to poke fun at-“What does that even mean Kerry??”) has the potential to either worsen discomfort or improve healing during times of crisis and its aftermath. Over the years we saw a spectrum of treatment facilities, in-patient and outpatient care rooms, hospital lobbies, and cafeterias. After Colleen died our house was transformed by what seemed to be a million bouquets, orchids and ferns, a rose bush and a new tree in the backyard: a physical manifestation of Colleen's reach. The places where we dwell define our dealings with death, almost as much as our intangible memories and feelings.

A recent issue of The Architectural Review is dedicated to death, chronicling crematoriums, chapels, hospitals, memorials, and care centers that deal with end of life experiences. One such exemplar of a place of healing is the Maggie’s Centres. I’ve admired the architecture of these centers for a while, but it wasn’t until caring for Colleen in her last few months that I truly longed for something similar in the US, much less Michigan.

Who is Maggie?

Maggie Keswick Jencks was a writer, landscape designer, cancer patient, and wife of architectural theorist Charles Jencks. In the last few months of her life, she and her husband and cancer nurse outlined their ideas for a cancer care center that could contrast the banal and sterile atmosphere of the hospital where she was being treated. In the Metropolis Magazine article "Living with Cancer" Samuel Medina describes Maggie's feelings: “In such neglected, thoughtless spaces, she wrote, patients like herself were left to 'wilt' under the desiccating glare of fluorescent lights.”

What is a Maggie’s Centre?

Maggie’s Centres offer freeemotional, practical, and social support for cancer patients, as well as their friends and family. The first one opened in Edinburgh, followed by 19 more in various cities across the UK, one in Hong Kong, and a few more planned for the UK and other international cities. Each center is designed by a different architect, resulting in a collection of wildly distinct buildings, yet all adhere to the same prompt. They are located near, but remain separate from, institutional hospitals and treatment centers, and do not replace conventional cancer care.

Simply put by Dezeen's Amy Frearson: “it offers a non-clinical environment where anyone affected by cancer can stop by for advice or support.”

Richard Rogers' design for the West London location has won multiple design awards, most notably the 2009 RIBA Stirling Prize. Rogers Stirk Harbour + Partners in turn donated their winnings back to the cancer care center.

Photo by José Miguel Hernández Hernández

Maggie's Centre West London - Weekly Schedule

Maggie’s Centres are intentionally informal, residential in scale, and multi-purposed. If you want community, you can be comforted to find a group gardening class, other patients to chat with, yoga, and therapy sessions. If you would like a private place to think, you can find a library, a quiet garden, a cozy reading nook, or a massage. Worried about financials, sleeping, or your nutrition? You can even talk to experts in these fields at Maggie’s Centres. When we were scrambling to find a massage therapist with cancer patient experience, we could have used the resources of Maggie’s Centres. When we simply wanted to get out of the house without dealing with sad or confused looks, we definitely could have used a Maggie’s.

The most recently completed Maggie’s Centre in Manchester is summed up by its architects, Foster + Partners, this way: “The design of the Manchester centre aims to establish a domestic atmosphere in a garden setting and, appropriately, is first glimpsed at the end of a tree-lined street, a short walk from The Christie Hospital and its leading oncology unit.”

Architects Have Feelings Too

Sir Norman Foster, designer of the Manchester location has said: "I have first-hand experience of the distress of a cancer diagnosis and understand how important Maggie's Centres are as a retreat offering information, sanctuary and support."

Frank Gehry, designer of the Dundee and Hong Kong locations, described his pain in designing the first center outside the UK: "I was going through the loss of a daughter while I was designing the center," the architect said. "I think you sort of suck it up and hope to make something that is soothing and respectful and hopeful. There's always hope, it's not a dead end." The Hong Kong center features a garden designed by Maggie's daughter, Lily Jencks.

Maggie’s husband, Charles Jencks, has also emphasized the importance of caregivers:In Steve Rose's Guardian article, Maggie's Centres: can architecture cure cancer?, Jencks states “in a way, the carers are more important than the patients. Because if the carers are cared for, they turn up, they enjoy it and you create this virtuous circle, this mood in a Maggie's Centre which is quite amazing. So architecture helps do that because it looks after the carers."

Most people have some connection to cancer, including architects. By involving star architects, like Frank Gehry, celebrities like Benedict Cumberbatch, and powerhouses like Camilla the Duchess of Cornwall, Maggie’s Centres have been able to gain support, offer free services, and continue opening new centers in cities across the UK and internationally.

Yet the success of Maggie’s Centres can also be attributed to its sensible (small scale), sensitive (support not limited to a scheduled appointment slot), and inclusive (accessible for everyone affected by cancer) concept that fills a gap in healthcare today. Some hospitals have even “solicited the foundation’s services” that Maggie’s Centres offer, such is the case with the opening of the Glasgow location, near Gartnavel General Hospital. Of the foundation’s past year of visitors, “99% found the support [Maggie’s Centres] offer helpful.” The West London location alone gets almost 100 visitors a day.

What makes this foundation even more unusual is its commitment to designers who help realize these goals. Charles Jencksclaims the architecture is “risk taking” because it engages with a very real existential crisis. “To live is a great risk. Cancer patients go through this cycle of desperate fear, of deciding to die,” he says. “But those like Maggie risked to live. That’s the architecture in a way and what architects need to get into their building. And I think they have.” Jencks admits to using the famous architects as a way to gain funding, notice, and continued support. In return, the architects jump at the opportunity to be among the list of top designers, to contribute to this innovation in cancer care, and to grapple with an unusual design challenge. Richard Rogers describes the centres as "in a way monumental, and precious, like a church that isn’t a church, a gallery that is not in a museum, or a house that is not a home." Maggie's Centres are fairly unprecedented in building type, and wrapped up in the program requirements are complicated emotions of fear, mortality, healing, and hope. With these challenges, architects and the Maggie's Centre charity have set up a high risk, high reward cancer care system.

Consider Design, Consider Space as a Factor in Caregiving

+ What is wrong with the U.S.?

You might be thinking well, lots of things. You might be thinking, this could never happen here! But if they can do it, maybe we can push ourselves to do something similar, at any scale. Take this funny comment about Americans for example, and note Maggie's original goal:

‘To cut a long story short, Maggie and I decided to fight,’ Jencks says. ‘Empowering the patient became our strapline, although Maggie hated it because it’s too American. From her experience came the idea of setting up one little room. It gave her a focus she never had in her life.’

+ Creating a Sense of Home

Each Maggie’s Centre includes a kitchen, and a central dining table, which are often the heart of a home. Creating the feeling of home can be simple, and an important way of healing or providing comfort.

Colleen at Home

Yet Maggie’s Centres don’t give off a New Age vibe or make reference to Freud’s consulting couch; they are informal, like a home away from home. Jencks coined the term ‘kitchenism’ to describe the communal ambience of the centres, which allows patients and carers to come and go when they wish and simply gather around the kitchen table for a cup of tea in a proper mug, not a hospital-issued plastic cup. 

— Cate St Hill, "Piles of Hope- 20 Years of Maggie's Centres"

+ Views of Nature, Natural Light, Fresh Air

It was pretty chilly when Colleen was very sick, and we all remember how crazy we probably looked, propping up chairs by our front door and opening it to get some fresh air and sun. My favorite part of the various Maggie’s Centres is the range of landscape designs and the attention that goes into shaping garden views, providing different ways to experience the outdoors, and considering the effects of natural light.

Maggie gets it. She understood that while hospitals are vital in treating cancer, a supplemental support system rooted in a physical place is necessary. She understood that caregivers and families need support too. She understood that light and atmosphere are important aspects in healing. Colleen would have loved what Maggie Keswick Jencks has started in the UK with Maggie's Centres, and I only hope they keep growing, right into the US.